Devin and Colin returned to Canada this afternoon, after a short but active visit; we were sad to see them leave, but grateful for their presence even for these few days.
Just before we left to take the boys to the airport, we received a call from Dr. Costanzo at Edward Hospital. She was calling in part to respond to an email Patty and I sent to her last week, and in part to update us on what doctors think may be the next best steps for Patty's care.
Dr. Costanzo explained that as she considers Patty's care, she thinks about what she would opt to do if she were in Patty's place. She again stated that, given Patty's age, it's too early to stop trying new things, even if it seems at times like we're fighting a losing battle and that Patty's quality of life may not currently be so wonderful.
The next proposed course of action is a round or so of rituximab (the drug that worries me so much), along with total lymphoid irradiation and possibly cytoxan administered intravenously. We don't know if plasmapheresis and IVIG are still to be part of the mix, or if they've been relegated to the scrap heap of ineffective treatments. For the first time in some time, we are again hearing murmurs that some form of external assist device might become necessary at some point. Sorry for all the "medical-speak" -- it's virtually impossible to explain these things any more easily. Suffice it to say that Patty has worked her way, without real success, through most of the traditional solutions to the antibodies issue, and is now trying lesser-tested approaches in the hope something tips the scales in her favor.
I asked Dr. Costanzo if it would be "stupidly optimistic" (a term we've shared with the doctor in a different context before) to think Patty could perhaps maintain for a significant time with her current heart and the milrinone transfusion. Dr. Costanzo said that she wouldn't call it "stupid" but certainly very optimistic, and assured us that she was still aware of Patty's desire to preserve a reasonable quality of life. This Thursday, Dr. Costanzo will perform a right-heart catheterization on Patty to check her heart pressures and cardiac output. The results from this test will help doctors plan for next steps.
Before signing off, Dr. Costanzo said something I've never heard from a doctor before -- she said, "I love you both." The comment was greatly appreciated, as the feeling is mutual.