It’s been a minute since I’ve updated everyone so thought I would take a moment to fill everyone in. 

Overall, Nick is doing well. His blood numbers are looking good. His hemoglobin last week was 12.6 which is great. 13 is low end normal. So he is definitely feeling like he has more energy. His liver numbers have improved some since being off the anti fungal meds. While some of the enzymes are high still, the numbers are stable and slowly making their way down here and there.  He is also fully off his anti rejection medication and so far has not had any symptoms of graft vs host disease.  PTL!!! 

His biopsy last time did show a trace amount of his Jak2 mutation. This is the cancer mutation that causes his myelofibrosis.  It only shows 4% so while 0 is best, it is a very small amount. They also ran a chimerism level for him again a couple weeks ago as he came off the anti rejection meds. This is to tell us the percentage of donor cells in his body. They were hopeful that his T cells would come up when they took him off this med. Unfortunately they did not, and actually went from the 60% range to 38%. His other myeloid donor cells also dropped. Having access to MyChart is a blessing and a curse. We were immediately alarmed because that’s a significant drop from just a month prior. Thoughts of having to start this process over again flood your mind. But the doctor did call him that night and said although it’s not great, it’s ok. 

So now the plan is for him to have what they call a DLI (donor lymphocyte infusion). Tomorrow he will have a small infusion of his donors T cells. They have them frozen for this purpose. While it is good that he is off his anti rejection meds, as that’s the first step, he is also at risk for getting graft vs host from these infusions. We will have to watch him very closely. Then in 4 weeks they will run his chimerism level again to see if it has improved. He may need several of these infusions over the next several months.

Luckily, many of those that I’ve talked to in the myelofibrosis Facebook group I’m in, have done very well after having DLI treatments. I’m PRAYING so hard for him to have a good, uneventful outcome. You feel so close to feeling a little normalcy and then the scary stuff invades your mind and heart again.  He has done quite well compared to so many others in this process. But hard to think about having to go back through it all over again. 

We certainly appreciate any prayers you can send up for a successful infusion and that he doesn’t develop any graft vs host diseases. Hopefully this DLI can get him up to 100% donor cells, kill any remaining Jak mutations and his baby immune system can grow stronger, faster.  Thank you again for following Nick’s journey. Love to you all!