To Hell and Back

The latest, from Bonnie:

Don’s kidney problems were resolved enough to start the new Blincyto immunotherapy treatment on Tuesday. Before we started the treatment his Fred Hutch doctor had asked us if we had read the side effects. I said I just skimmed them since every drug has so many possible side effects, you wonder how anyone has the courage to take them. Though immunotherapy was supposed to be gentler to his system than chemo, she reiterated that there were possible neurological side effects including headache, tremors, seizures, and coma! The drug is first administered at a low dose for two days to see how the patient tolerates it then is quadrupled for the next three days. 

Don’s hands started trembling during the low dose, so they gave him steroids to counteract the shakiness and on Thursday they began the high dose. By Friday night his whole body started trembling with intermittent shaking. He became disoriented and couldn’t answer simple questions. He stared at the wall during conversations. He couldn’t hold a phone and had to be fed. They had to use the ceiling pulley to lift him from the chair to the bed as even two nurses couldn’t help him stand. 

To assess the neurological effects of the drug, they asked Don to write his favorite food (steak) every few hours to compare the handwriting. The first picture I posted in this letter is of his many attempts to write “steak.” Only one time was it almost legible, then he devolved into not even being able to hold the pen. Scott and Kyle both came with their families and we were all so frightened. Friday was clearly the worst day we have experienced in this journey which seemed to be turning into a house of horrors. 

On Friday afternoon they totally stopped the drug and gave him only steroids. He gradually emerged back into reality during Saturday and by  Sunday he was still shaking but could hold a conversation and was back to kidding the nurses.  

His hospital release will depend on recovering from this drug. At this point he is too shaky for them to remove the catheter and too shaky to stand. They think he will recover between 2-5 days enough to go home. 

What’s next? The normal course of treatment is chemo 8 times or Blincyto 4 times. There are no studies on the effectiveness of only completing half the treatment. Don’s Fred Hutch doctor is leaning toward having him go into the maintenance stage (which would normally be after the full completed treatments) but Don and I are learning toward going back for more chemo. 

Even though it is really hard on him, as you all know, we are very hard workers and tackle challenges together. As Don said today, “We are going to beat this!”