If you look at the thumbnail picture for this post, also pasted below for ease, it is a good metaphor for what the Ara-C did for Jennings’s MRD. In short, not much. The work of art on the right would represent where he started, the colorful squares as the “bad cells” making up 0.12% of the sample. The attempt by Henry on the left would represent where he sits now, 0.09%. Coincidentally, these were being made as the bone marrow was being extracted from J.

We got results late yesterday, a surprise email just after 5p. This is the synopsis:

In this bizarre world of statistics, he is technically MRD negative. But, they can still see disease. It is just below the cutoff threshold for considering an AML patient MRD negative.

This is obviously not great. Those cells, left to their own devices, will multiply, eventually blasting off and taking over his blood.

We had a conference call last night with his leukemia doctor and transplant doctor to discuss options. They had two main ones: 1) do nothing and go to transplant as planned on Wednesday or 2) try giving more Venetoclax and Azacytadine. The Ven / Aza drug combo is on the table for several reasons. He responded very well to it back in early January. At that time, it took his MRD from 3.96% down to the 0.12%. It is also a very “mild” treatment. It will not knock his counts down, so he will avoid being neutropenic again right before transplant (he is just now recovering out of that from the Ara-C). It will also not make him very sick, another plus right before transplant. He needs to be in the best physical shape possible going into that.

We are heavy with this news. This is where the fact that this is relapsed AML with monosomy 7 with MLL is rearing its ugly head. The disease is stubborn and resistant. Thus far it has refusing to be eradicated by medicines that have been thrown at it since the day before Thanksgiving. Second transplants for AML don’t have rosy success rates, but entering a second transplant with disease takes those stats and cuts them substantially. It is a hard reality to face.

Given his diagnosis and how his treatment has played out thus far, neither Dr. Rubnitz or Dr. Talleur felt strongly that getting him down to 0.0% would really make a difference in outcome. It might make you feel good on paper to see it go from 0.09% down to an undetectable level, but in reality it does not change the stubbornness or resistance that the AML has displayed. Either the transplant will work, in which case it would / should overcome that low level disease. The new cells will forever engraft and take over his bone marrow, instantly recognizing and killing any cells that try to form with the markers above. Or they won’t. And those couple of cells that may not have even been detected could slip past the new immune system.

However logical and sound their reasoning, our guts are just not there. It feels dumb to knowingly go into transplant with disease present, even at this low level, if there is still a good option on the table. Jennings is in great shape, he tolerated the Ven / Aza very well before, and Dr. Rubnitz doesn’t think that it will suddenly blast off from 0.09% to a higher level. So, we started Ven / Aza this afternoon. We consulted Soheil again as well and he is in agreement with the team’s thoughts.

Now we have another decision to make. The options above are not mutually exclusive, so we have the option of keeping Wednesday as the admission date for transplant. We also have the option of delaying admission until March 3rd, two weeks later. We are leaning towards March 3rd, again for multiple reasons. First off, it would allow a full 7-day course (or more) of azacytadine to be given and we would have the opportunity to check his marrow one more time. If we keep Wednesday, it would just be 4 days of Ven / Aza, then straight into transplant without the opportunity to see if it did anything to 0.09%. Our next look at his marrow would be roughly 30 days after Day Zero, somewhere around early April.

The second reason is related to another surprise piece of news last night. His CT scan showed a small area of concern in his lungs. Everyone who read the images, radiologist, pulmonologist, infectious disease, transplant team, all agree that it points to a fungal infection. So far, he has tested negative for the more common fungal infections and there are a few more they’ll test for next week. However, they can’t test for everything and Dr. Talleur is not optimistic that the other tests will shed any light. It is such a small area and in a difficult spot that sampling fluid or taking a biopsy would likely not help either. This is a big risk going into transplant. His immune system will be gone and that could open the door for this infection to get out of control. Fungal infections can be tough to treat and the lungs are not a place you want to play around with one.

So, if we push transplant out two weeks, it is possible that his current immune system can take it out. Even if that doesn’t happen, the transplant team will be able to optimize the antifungal medicine he is currently taking. He has been on Voriconazole since coming off of Venetoclax (they don’t play well), so they would have time to measure the level of Vori in his system. If it is at the right level, then they would switch meds since the infection is present. If it’s low, they would increase his dose.

We plan to talk with Dr. Rubnitz and Dr. Talleur again on Monday before finalizing the date. We’ll work that in to the host of other pre-transplant appointments he has, including another sedation for an MRI.

One silver lining if we do decide to move the date is that we may be able to get our local move accomplished before he’s admitted. That would get us all settled in our more “permanent” housing here and would be much more easily done with both of us working together (vs. one of us in the hospital with Jennings during the move).

Oh, and it’s supposed to snow here this week. Could be 3-5” on Monday and potentially more Wednesday / Thursday. It hasn’t been above freezing since Wednesday and won’t be until next weekend at the earliest. Everything is frozen, the freezing rain from Wednesday night looking like it just fell hours ago.

It has been this way all along, but it has never been more clear. He is in God’s hands. The doctors are out of clear paths and we get asked more and more, “What do you guys want to do?” These are experts in their fields laying out options, then saying we really don’t know and the choice is ours. Now more than ever we need to still our minds and know that He is God. He is good and his ways are higher than ours. We hope and pray that those ways include healing Jennings here on earth. As it was true for the remnant of Israel, we pray this will be true of Jennings here: “For I will restore health to you, and your wounds I will heal” Jer 30:17

#allinforjennings