May 16, 2022

I am writing this from Scott's bedside in hospice. Scott ended up staying about 2.5 weeks in the hospital to receive periodic blood transfusions which gave him some extra time to have visits with family and friends. While this has been the most difficult time of my life, it's also had its beautiful and pure and happy moments. Seeing Scott say his goodbyes to his family, friends, and students, and saying our own goodbyes to each other is something that I will always remember and treasure. There was a flood of people telling him how much they love him, holding his hand, and giving him hugs which he loved. He had a happy Mother's Day visit with both his Mom and my Mom. He exchanged gifts and played with our 2 year old niece Miyo. In the midst of shock over his prognosis on his first day at the hospital, he asked me to bring stuffed animals to his hospital room for Miyo because he wanted her to feel safe and comfortable there. Even at his weakest and most vulnerable, he was always thinking of others.

After a certain point, he started declining and the blood transfusions were no longer effective, so we made the transition to hospice last Friday evening. He now sleeps most of the time and his ability to have a conversation is very limited. I already miss our chats so much. The hospice staff have been lovely and caring and his pain is well-controlled. My physician sister Vicki's professional medical opinion is that he is "an incredible specimen of a man," as his body continues to fight on and remains surprisingly strong despite the advanced state of his disease. Even so, we have been told that he has less than a week left. Both our families have been providing incredible support and visit him every day, and we have been singing songs, playing music, and reading his favorite poems for him. In the middle of one night, when he woke up in a state of confusion, he called the nurse and asked, "Can you sing a cappella while I'm bored?"

I know Scott wasn't able to respond to everyone's messages or Facetime/call everyone due to how tired he was. I read as many messages as I could to him and he appreciated all of them. Please know that he was filled with gratitude for all the good wishes and love that he received, and for all the people who reached out to share how he made their lives better. 

My greatest wish for him now is that he feels as peaceful and loved as possible on this final journey of his life. I asked the hospice nurse this morning why he still seems to be fighting so hard. She said that part of it is likely that he's young and strong-willed, and part of it is that it's hard to leave all your loved ones behind. I told him tonight that I think he's going home soon, and that I will always love him and miss him so much, and that I will be OK and will be with him again one day, and I think he understood.