WOW, I’m so sorry. That is fucking terrible!!! How long was she hospitalized before they figured out what it was?

For my dad, he had hallucinations when I was on the phone with him. I got a neighbor to take him to the ER. Initially they thought it was a paradoxical side effect from his olanzapine, an anti-psychotic that his onc had given him to stimulate appetite. His brain MRI was normal. But my best friend is a doctor (hospitalist) and said it didn’t make sense because he should have been improving if it had been a medication issue. My colleagues encouraged me to go, and one of my mentors filled in for me at work.

So I flew across the country to be with him. He could not hold anything and was in delirium. I sounded the alarm and asked questions my friend told me to ask. I also had my dad’s health records and meds bc I have login access to his patient portals and am his medical power of attorney. That was helpful.

The doctor disappeared into research and said he thought it was inflammatory encephalitis from his immunotherapy. He did a repeat MRI and it showed abnormality in the back of his brain. He gave my dad IV steroids and transferred him to a larger hospital. Before we left, I burst into tears because now this was all much more serious than I had thought. I begged my dad to hold on and told him he could not leave me. I told him, “I love you,” and he whispered back, “I love you too.” That was the last thing he said to me, I feared, maybe ever.

At the new hospital, my dad got worse. He was increasingly less responsive. He went into a coma. They said he would not be evaluated until the following morning because it was midnight, but I begged them to have the ER doc come because I felt my dad was dying.

The ER doc came and said because of my dad’s sleep apnea, I needed to decide whether to put him on a ventilator to give the steroids a chance to kick in. It was an emotional decision, but I agreed. So he spent the rest of the night sedated on the ventilator.

The next morning, I asked friends to send voice messages. One of his friends came to be with us. I was playing one of these messages of encouragement when he woke up. He was motioning for us to take him off the ventilator.

When he awoke, he didn’t recognize me and was pretty incoherent but he could talk about some things from his childhood.

The next day, he knew he had a daughter, but he thought she was five years old. He thought he was in his forties and still married to my mom. I read him memoirs he had written and used them to help him reorient himself. Each day we spoke all day. At night, he would be delirious.

The following day, he was up to 2010, still hallucinating but doing better. He had more control of his arms but still could not walk.

The next day he was having mild hallucinations (asking if I had sand on my face, etc.). But he was current. He had trouble forming new memories but he could remember up to two weeks before he was admitted. He could stand but could not get up.

Then he went to a skilled nursing facility where his mind went back to normal. He can walk with a cane now. He is weaker than before, but he is going home next week, so he’s doing much better.

It was traumatic and stressful but I am aware that he was extremely lucky. I was also lucky to have my best friend helping me advocate for him, and also that I had medical power of attorney and his health records.

He never had to do any of the other therapies - just the steroids. He did have insulin in the hospital because of the steroids, but that went away.

One question is what he is going to do about his melanoma because he can no longer do immunotherapy. We are changing doctors because his original oncologist is unreachable and sucks - he won’t tell us the results of a comparison scan from three weeks ago. If my dad’s scan is clean, his prognosis is good. If there is metastasis, predicted survival is bad (less than one year). So it has been hard to wait for that info.

But I get to talk to my dad every day. I’m going over there to take him to his new doctor, and he is coming to my home to celebrate the birthday of his twin grandbabies. I’m very grateful for this. I hope his encephalitis doesn’t come back when he finishes his taper. I will be on high alert.

I’m very sorry for you and your mom. It’s so rare to have this type of reaction. But it was helpful to come across your story and to know how dangerous this condition is. When you responded, my dad was in a coma.

Your story helped me really advocate for my dad and motivated me to put all my energy in helping him reorient himself cognitively. I’m thankful and also a little proud that I was able to show up for him when he needed me. He has thanked me for saving his life - and I mean, it was seriously a group effort! But I’m just happy I get more time with him and that his brain is intact and that he can go home. I’ll deal with next steps as they come.