I've struggled with writing this for a while now as I know the words I'm about to say we're going to come as a shock and potentially frighten some of you, and fir this I'm so sorry and I debated not sharing at all. But I find strength in our group and I really need it right now. I apologize in advance for the stress and anxiety this might cause any of you going through treatment as I know whenever I would read a post like this it would send me into a tailspin.
We went in for Tony's 18 month check up last month as most of you know because I asked for prayers for great results. However on 13 of January his normal blood counts for the whites and neutrophils were lower than they usually are. Having just got over a bout of horrible stomach flu his doctor attributed it to recovering from the virus. The labs were still in normal range they were just low for Tony's normal and so we wrapped up the appointment disappointed but not super concerned as his doctor was not concerned and everything was still in normal limits. in fact his most recent chimerism analysis showed that he was still full donor. We weren't comfortable with the results and so we requested come back in 2 weeks and two weeks later the counts are still low, the doctor offered to ease our minds and just have a bone marrow that day for definitive results but we opted to wait one more week bc there was a ton of these LGL reactive lymphs in the blood, indicative of a viral or tcell response (also later that day we were going to find out if the IVF treatment and embryo transfer was successful or not and were to find out if I was pregnant, & we did not want that overshadowed by waiting for Marrow results)
We did decide to have a chimerism run just to make sure that everything was still good and we got a call that his had dropped from 100% to 92% so this caused us a lot more concern
So on 2/11 we went into clinic with the plan to have labs and a marrow if counts were still down, after the grueling hour of waiting for results, they came back and had tanked. We were so upset, just holding each other, crying, screaming, shaking.
His dr came in and discussed everything w us, and told us she take the cells down straight to the lab and have them stained them immediately so we didn't have to wait anymore for these agonizing results. We drove home in complete shock and numbness purely expecting a phone call at 7 PM later that night to indicate relapse, but then she called and said preliminary results no leukemia cells at all!
We are both crumpled to the floor and were so shocked as we had had anticipated the worst. we made an appointment to see her next week to follow up have more labs drawn and have the definitive cytogenetic and molecular test results by then
So 2/17 the exact three-year anniversary of his original diagnosis she walked into the room and we knew immediately things were not good. Even though there was no leukemia and no blasts in the marrow the cytogenetic testing came back with markers for his original leukemia -inversion 16.
There are no words to describe the feeling I had-just two days before we had gone in to my doctor and saw the heartbeat of the baby on the screen, we were so ready to put this disease behind us and move forward in our lives. But as God has will have it, that is not going to happen.
Since there was such a minimal (molecular) amount of detectable disease she decided on a plan of five days of outpatient Decitabine chemo followed with the sixth day of a DLI. we completed that yesterday. Assess and plan accordingly based on how he responds. I am 7 weeks pregnant and will never understand how the "best prognostic AML" will not go away, to relapse now is beyond devastating.
So Now we wait...