This is an entry by Don, Charles' father.
Dear Family and Friends:
Thank you wonderful family and friends for your love and support. Charles, and we, appreciate the many comments of love and support. We are greatly blessed!
Yesterday Charles had a minor surgery to inject collagen into his left vocal chord. Back in August he had the same procedure when he had almost lost his voice. The injection fattens the vocal chord so that speaking and swallowing work better. The affects of this should be seen within a day or so. The procedure went well and Charles did good.
The OSHU Oncology Social Worker, Keren, called yesterday and said that Dr Chen, the rounds Dr, wanted to meet with family today. We set the time for 3:15pm. At 3:25 we all gathered: Dr Chen; the palliative care team (Amy, Anna & Dr Anne); the oncology social worker, Keren; current nurse, Tim; an OSHU chaplain, Debi; girlfriend, Karlin and family: Dad, Mom and brother Jonathan.
Dr Chen explained that with the current relapse, the 3rd, there was not a lot that they could do. They would continue to give chemo therapy and see how the symptoms he is having respond. He is currently having trouble speaking, swallowing and his right eye has a "blister." His energy has fallen and he is generally weaker. He has added pain to the head and neck. Dr Chen added that at some point the leukemia would enter the blood. The next topic was Charles pain management, comfort and quality of life. These are the main considerations now. Then, there was discussion of where he would best receive care. Dr Chen said the options where: 1.) continue at OHSU, 2.) hospice care facility or 3.) home hospice care. The options were discussed. Then, the Dr told us we could take the weekend to discuss care and let OHSU know what the family decided. We have set Sunday, 12:00 @ OHSU, with family and Karlin, to discuss and decide.
Currently Dr Chen recommended that Charles pain medication be changed from Dilaudid to Fentanyl. This change was made about 2:00pm. Here it is 6:30pm and they are changing back to Dilaudid. Turns out that the Fentanyl doesn't jive with Charles. It doesn't quell the pain real well and it causes him to be disoriented and have delusions. Just a short time ago he thought he was a character in the movies. Charles wanted the change and we agreed.
The Drs, nurses and staff here at OHSU are WONDERFUL!
So, we press forward, knowing that family, friendship and love are Eternal. Thank you all! dg