Hello @loribmt !
So good to connect with you again! We are thrilled you also continue to feel good and do amazing things here for so many of us!
Dane completed 19 cycles of maintenance treatment in March. He is at the point where his veins are irritated from the monthly, week long infusions, and he is tired of feeling nauseated for a week to ten days per month. It’s been a lot. He continues to be in full remission (MRD negative), thank God. Strong chimerism and all labs have been very stable. He has great energy (he walked 7 miles yesterday!) but the maintenance treatment is taking its toll. The docs continue to remind us they have no large scale studies to confirm that the maintenance treatment is doing more good than potential harm. They remind us that he had a very high risk mutation and it is rare to boot. His doc has one other patient, a young woman, who had the same mutation, who did not have the option of maintenance treatment 6 years ago and she is doing well. It’s a gamble that Dane continues to wrestle with. They recommended 24 cycles (MD Anderson and Northwestern) so he’s close. But he may not go through with all of them. As you can imagine, we spend many hours discussing this!
He’s also dealt with RSV in January and completely recovered, again thankfully. Just this week he came down with a mild case of human pneumovirus while traveling to Florida (something they swab for when you present with a cough) and the have him on antibiotics just to be safe. He’s doing well and his immune system seems to be working well. He wears a mask in any crowds and he avoids crowds when he can.
It’s very exciting to get closer to his 2 year anniversary. He is planning a fishing trip to Alaska with his son in June. We have a new grand daughter who was just born in Paris! Our grandsons are growing fast and yes throne Ben just after Dane’s transplant will be 2 years old! I’ll go meet my new granddaughter at the end of this month in Paris, exciting!

We are considering taking a cruise along the Maine coast in August on a very small ship…. well before cold and flu season. The docs remind us that he didn’t go through all this treatment not to live his life so they tell him he can travel while also being careful (masking and hand washing).
So the roller coaster ride of life continues!
Thank you for being on this ride with us. It helps so much, especially when you don’t feel alone on this sometimes bumpy ride.
Sending big hugs!
Mary and Dane