If only things could be simple.

A few weeks back we received a call from Xavier’s doctor with results from his Day +56 blood tests. John answered and it was immediately apparent that it was not going to be a quick conversation letting us know that everything is on track and looking good. Nope. It was a conversation that consisted of the Doctor letting us know that we needed to make a new plan, and fast.

In our first round of testing at Day +28, Xavier’s blood (not bone marrow) had come back undetectable for CML. No leukemia. The new tests said otherwise. At what percentage, I don’t even remember to be honest. I couldn’t get past the fact that it was now positive.

In addition, the chimerism test showed that W’s cells only made up 82%. We were hoping to see 100% chemistry. This is an important test done after a donor bone marrow transplant that involves identifying the genetic profiles of the recipient and donor, then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

In that moment all I can think besides being sick to my stomach is LEAVE XAVIER ALONE! What the heck! And by the way that is the PG version of what was going through my mind… This exact feeling still runs through me multiple times a day. But can you really blame me…

We got this unsettling news on a Thursday evening and it also happened to be our doctors very last day attending at the SCCA clinic. Go figure, right? Anyway, she gave us an idea of what she thought we should do moving forward, but said to wait for the new attending doctor to give us a call the next morning…. Yes, it was a long night. We’ve had a lot of pretty good punches to the gut over the last couple years but there was something about this one that really made it hard for us to catch our breath.

The new attending, whom by the way does have some knowledge of CML (our other doctor did not), called us the next morning. He asked us some questions as he was completely new to our case aside from a brief conversation he had with our previous doctor the night before and Xavier’s file on his desk.

The first thing that I must say is that he let us know there is hope that we can get rid of this nasty leukemia, and a good chance at that. We do have a few options, however this is not the way any of us wanted to go about it.

What we really need to see is Westin’s cells blasting out the remainder of Xavier’s cells. That is where the residual leukemia is. Again, we’re at 82%, we need to be at 100%.

Option #1: Quickly wean Xavier off of Tacrolimus (Tacro), the immunosuppressant that Xavier is on to prevent and treat Graph vs. Host Disease (GVHD).

Option #2: Start back on a TKI (the targeted therapy/chemo we were taking the year prior to transplant) AND a Donor lymphocyte infusion (DIL). This is taking blood from the Xavier’s big brother (his original donor) and infusing it into Xavier.

The goal of either option would be to hopefully create minor GVHD so the donor t-cells will overtake Xavier’s cells to eliminate the residual leukemia and bring the chemistry to 100%. Both have their risks, but we decided that option #1 made the most sense for our situation. Option #2 is still there if we need it.

What normally takes months to wean off of, we got Xavier off of his Tacro in 2 weeks. Done. He is completely off. He is doing great. He has had no signs of GVHD but we are hopeful that just the very act of getting off this immunosuppressant will allow the donor t-cells to take over. Xavier has his Day +80 bone marrow biopsy and blood tests in the beginning of September. All we do now is wait.

In our last appointment, the doctor asked us if we were frustrated. I was taken aback by the question. Frustrated? No. We know we really have no choice and that this is the next step for us. We need to be patient and wait to see what the next round of testing indicates. What we do feel is anxiety. We are anxious. We are coping and living our day-today life the best we can, I think pretty fantastic considering. We are taking it in stride. It hurts but we have no control in this moment and we won’t let that get the best of us.

I think that it is incredibly important to note that Xavier, while we had some concerning news a few weeks ago, he is doing beautifully! SO good. He is happy, smiling, laughing, playing with his big brother, golfing with Daddy!

Soccer Dance! He is just an absolute pleasure to be around. John and I hear him laughing and telling jokes and it brings us this insane amount of joy and it’s just like… that is it. That is what we needed today. Our day is complete. There is definitely something about this kid… And his big brother.

You know, we are not cruising through this like we had hoped for, but that does not mean we won’t get to our destination. We are taking the alternate route, set on cruise control, and we’ll get there when the time is right.