Saturday, Dec 5, 2015 (Day 30 post CART cell infusion…16th day in the hospital)

On December 5, 2015 by Michelle Love

Saturday (Day 30 post CART cell infusion…16th day in the hospital)

BJ had a better night back in the bone marrow unit. He woke up more mentally alert than I have seen him in days. He wrote “Remote” on his board, and after I gave him the TV remote, he put on ESPN. He seemed to progress a little in the sounds he makes when he tries to speak. At one point during the day, I asked him if he was ok, and I could hear him say “I’m alright”, even though it was not articulated.

The Neurologists came in to check on him and told us that while the MRI showed white matter disease, those were in the same places as seen in previous MRIs. This white matter disease is caused by high-dose chemotherapy, which BJ has had many times over the past 3 1/2 years. The minimal amount of blood on the front left side of his brain was also not what is causing his dysarthria (speech problems). Psychiatrists also came in and admitted that the Risperdal caused the dysarthria as well as the Parkinson’s-like tremors that he is experiencing in his hands. Another drug, Cogentin, was recommended to reverse these side effects. Initially I was very vocal to the Psychiatry team against giving BJ Risperdal for his delirium, but as they pressured and BJ’s delirium worsened, I caved. So it’s really not sitting well with me that this drug caused him harm. They say it’s reversible, but they also told me that they often prescribe Risperdal, and they haven’t seen problems with it.

BJ’s white blood cell count continues to rise, and the blast percentage is also high. He is having intermittent fevers of 102 and under, but it doesn’t seem like his CART cells are wreaking the havoc they once did. It was absolutely heartbreaking when he wanted to see his lab sheet today. I didn’t say a word, but saw his eyes go to the section where the CBC and Differential are listed. Then he just looked at me, still holding the paper. I told him that we would talk about it, and I got out the chart I’ve been keeping to track some of his key lab values. I showed him his white cell count chart from the past month, pointing out where his CART cells kicked in, and dropped his count down from 72k to nothing. I showed him the rise in CART cell copies from the research labs, and told him that those cells that dropped the 72k, have multiplied, and are there to kill more leukemia cells. I told him that we just have to trust God. BJ has always trusted that God knows what He’s doing, that He has a plan for BJ’s life. One of BJ’s favorite verses is Jeremiah 29:11…and even though we can’t see what’s over this mountain, that promise still applies. He shook his head in agreement.

He asked to go for a wheelchair ride Saturday afternoon, and it was great to see that he wanted to get out of his bed, and out of this room for a short while. The other picture is where they took the sample from his bone marrow in his front right hip bone. Yes, that is a hole.

Please continue to pray.