[David M]

All,

I mentioned earlier that my brother had been diagnosed with myelofibrosis back in mid-2020. On July 21, 2021, he underwent a stem-cell transplant procedure in Nashville, TN, at the Sarah Cannon (aka Minnie Pearl) Cancer Clinic. He remained in Nashville for about 100 days after the transplant, and although it certainly was not an easy recovery, he did recover enough to go home after that.

His recovery was slow, but he eventually was able to get out and go places. He supported his daughter's softball team in her senior year of high school, and he was able to attend most, if not all, of the games. He was able to drive to various nearby places, go to church, eat at restaurants, do light yard-work, and had started to get back to "being himself" once again.

However, he never fully recovered his strength, appetite, energy, and muscle-mass lost during the stem cell transplant. During the transplant procedure and recovery, he had lost from about 185-190 lbs down to about 125 lbs. He had horrible mouth sores for much of the time that kept him from eating -- when he felt like eating.

He actually was able to celebrate living past the 1-year anniversary of his transplant -- and he seemed to be slowly recovering. However, he started having bouts of GVHD that still caused horrible mouth sores and other problems. He also lost his sense of taste for several months -- which didn't help him in his need to eat and gain back his weight. His doctors eventually put him back on JAKAFI, and perhaps other meds, to counter these problems.

After a short time, he started having odd symptoms. He started hallucinating on occasion, and his eyesight began to diminish. The doctors seemed to think these symptoms were within the range of symptoms one might experience on these powerful meds, but still, this was considered better than GVHD. As the symptoms worsened -- now including a sort of "goofiness" or "being high" aspect to his personality, which started becoming more extreme -- the family insisted that the doctors either take him off the meds or adjust them to a more appropriate dosage level. Something was defnitely wrong! The doctors finally decided to stop the meds and to take a closer look at his situation.

He checked in to Sarah Cannon Clinic in early October. The day before going there, he still could barely see, but he was doing well enough to be driving around his farm on a tractor. Shortly after checking into the clinic, his condition began to decline. Within a few days, he started sleeping almost all the time. Occasionally, he would awaken for short time, say a few words to family, and go back to sleep. He started waking less often and was in peaceful sleep almost continuously. After a few such weeks at Sarah Cannon, the doctors there were ready to give up and bring in palliative care!

The family was not ready to give up, and they did everything they could to have him transferred to Vanderbilt Hospital, just down the road. Finally, he was transferred to Vanderbilt, and at first, it looked like things would turn around. He hadn't spoken or been awake in several days, but after being transferred to Vanderbilt, he woke up and told his wife and daughters he loved them... he seemed be himself for a few minutes. Then he went back to sleep.

The medical teams at Vanderbilt worked feverishly and did everything they could to isolate the cause of my brother's trouble. They did repeated spinal taps, but these showed no sign of infection or of what might be going on in the brain. Finally, as a sort of last resort, they did a brain biospy. The MRI/CT scans had indicated some discoloration on and in the brain that appeared to be some kind of infection. Only by doing a brain biospy could they possibly identify the type of infection -- to determine how to possibly treat it. Unfortunately, the brain biopsy also showed no infection!

Sadly, my brother passed away at Vanderbilt Hospital a few days later (i.e. October 30, 2022) from a brain bleed. The doctors there and at Sarah Cannon never were able to identify with certainty what had happened to my brother's brain to cause his downward spiral. Biopsy tissue sent to the CDC was checked by them and results there were also inconclusive.

The only theory that has made much sense to me was that the JAKAFI (and perhaps other meds he had been given) used to counter the GVHD had lowered his immune system to the point that an opportunistic virus (PML, perhaps?) attacked his brain and did great damage. Then when the JAKAFI (and other meds) were stopped, his immune system returned and destroyed the GVHD. But by this time, the damage to the brain had been done; the discoloration in the scans was not showing "infection," it was showing the damage done by the earlier virus attack. Well, that is just a theory, but it fits the evidence, as far as I can see.

I just wanted to give you all an update. Sorry for the sad story; but it was a sad and difficult time for us. Please keep my brother's family in your prayers.

in Him,
David M